Diagnosis and Treatment of Lymphedema After Breast Cancer: A Population-Based Study

Objective To examine factors associated with variations in diagnosis and rehabilitation treatments received by women with self-reported lymphedema resulting from breast cancer care. Design A large, population-based, prospective longitudinal telephone survey. Setting California, Florida, Illinois, and New York. Participants Elderly (65+ years) women identified from Medicare claims as having had an incident breast cancer surgery in 2003. Interventions Not applicable. Main Outcome Measures Self-reported incidence of lymphedema symptoms, formal diagnosis of lymphedema, treatments for lymphedema. Results Of the 450 breast cancer survivors with lymphedema who participated in the study, 290 (64.4%) were formally diagnosed with the condition by a physician. An additional 160 (35.6%) reported symptoms consistent with lymphedema (ie, arm swelling on the side of surgery that is absent on the contralateral arm) but were not formally diagnosed. Of those who reported being diagnosed by a physician, 39 (13.4%) received complete decongestive therapy that included multiple components of treatment (ie, manual lymphatic drainage, bandaging with short stretch bandages, the use of compression sleeves, skin care, and remedial exercises); 24 (8.3%) were treated with manual lymphatic drainage only; 162 (55.9%) used bandages, compression garments, or a pneumatic pump only; 8 (2.8%) relied solely on skin care or exercise to relieve symptoms; and 65 (22.4%) received no treatment at all. Multivariate regressions revealed that race (African American), lower income, and lower levels of social support increased a woman's probability of having undiagnosed lymphedema. Even when they were formally diagnosed, African American women were more likely to receive no treatment or to be treated with bandages/compression only rather than to receive the multimodality, complete decongestive therapy. Conclusions Lymphedema is a disabling chronic condition related to breast cancer treatment. Our results suggest that a substantial proportion of persons reporting symptoms were not formally diagnosed with the condition, thereby reducing their opportunity for treatment. The variation in rehabilitation treatments received by women who were formally diagnosed with the condition by a physician suggests that lymphedema might not have been optimally addressed in many cases despite the availability of effective interventions.